Eye and heart updates (again).

With everything that has been going on with my optic discs and brain lately, I never took the opportunity to write about the outcome of my cardiologist and ophthalmologist appointments from last March.

Wind blown.
My cardiologist appointment didn’t go as well as we’d hoped; my aorta had grown a bit since my last visit, which is never the greatest thing to hear, but it was also still quite stable overall. To get a better idea of how quickly it may or may not be progressing—and to maybe start me on treatment with Losartan if necessary—the cardiologist wanted to see me again in 6 months for an MRI. And, the MRI results showed that in those 6 months my aorta hadn’t grown any further, so for the time being it’s still safe to leave it be. I’m due for my next checkup in about 2 months, so we’ll see how things are looking now. I’m quite relieved at the results, and as far as I know my aorta is doing pretty well for someone my age with MFS, so, no complaints there.

As I’ve mentioned before on here (in “It’s hard to go through it again.” and “We always carry on, and sometimes it gets easier.“), the lens in my right eye suddenly shifted early one morning as I was getting out of bed. This was the third time that I’d experienced something like this with my lenses, so I was pretty certain I knew what was going on. It was somewhat devastating at the time because both times this had happened before, I would end up needing surgery soon after, and my vision would never be the same. But, thankfully it was (and is!) still hanging on because of some factors we weren’t aware of.

When we got to my ophthalmologist in Vancouver he told us that my lens was indeed holding on by one suture instead of two, which was why it had shifted and was now relatively (but not completely) loose. What we didn’t know was that during my last lens reattachment surgery, only one suture had come loose, so he only had to replace the one. We had always assumed both had been replaced. So now, the new suture is still stable and hanging on, but the original suture from my lens implant surgery—13 years ago—has finally let go. This can help account for why this lone suture has managed to hang on two years longer than last time—it’s relatively new and strong.

The trouble is, with only one suture holding all of that weight—in combination with the weak tissue from my disorder, trying to support it—we were told that it’s not a matter of if it fully dislocates again, but when. Sometimes it’s hard to sit here waiting for the other shoe to drop, not knowing when we’ll have to rush back to Van for yet another eye surgery and all of the difficulties that entails. But, I was already expecting another eye surgery, and having these extra years in between has been a gift, so the news wasn’t too bad.

My ophthalmologist was (and is) a bit concerned about some of the complications that a loose lens can cause regarding inflammation, hemorrhages and retinal swelling, so,— as long as the lens is hanging on—we’ll have to go back to Van every 6 months to check on all of those things. On a positive note, the lens in my right eye has had both of it’s sutures replaced, so it should be much more stable and less likely to subluxate like this one did, which is an incredible relief.

So, those are my—as per usual—long overdue eye and heart updates. I can’t believe it’s been nearly two years since everything with my lens kicked off. I’m so surprised and grateful that it’s still holding on.

Thanks for reading!
– Katie

Duloxetine/Cymbalta

Cymbalta was the latest antidepressant (SNRI class) prescribed to me in the hopes of helping to manage my chronic pain. I’ll re-post the same thing I published a few posts ago about the motivation behind prescribing antidepressants to patients with chronic pain as my doctor explained it to me. She said that some people get defensive at the suggestion of antidepressants for pain as if the doctor thinks that the pain is in your head because your depressed or something but the truth is: “we know that you have this disorder, we know that the pain is in your ligaments and tissue and not in your head” but that after being in chronic pain for long periods of time your brain begins to overfire pain signals (as I’ve talked about before) and that the use of antidepressants is not to treat the root cause of the pain, – they don’t work for that – but instead to treat that amplification of the pain caused by your brain signals.

So with this thought and hope in mind I resigned to trying Cymbalta. However, I didn’t get far. Only two nights into taking the medication I once again began experiencing the very rare side effect of urinary retention. I could feel it becoming harder and harder for me to urinate and at one point, again, went almost twelve hours without going. Obviously this isn’t something you can just allow to happen so I ended up having to stop them almost as soon as I started. I was disappointed that I didn’t even really get to give them a shot, but also relieved that I didn’t have to struggle through the other side effects I inevitably saw coming. So, I can’t be of too much use to those trying Cymbalta for pain, I didn’t get much of the experience. 

{Any medical terms and/or definitions featured on this blog have been thoroughly researched by me as to not lead to any false consumption of information by the reader. Though, that aside; I am not a doctor and the medical information on this site should not be taken as a substitute for the advice of medical professionals. If you’re experiencing any health issues don’t hesitate to contact your doctor.}